Dystonia from a flu vaccine? Almost certainly not.

Several of my readers have been writing in with links and stories about the case of Desiree Jennings, a 28-year-old cheerleader who was apparently healthy until sometime in August, when she received the seasonal flu vaccine. A typical news story on Jennings can be seen here:

I’m not a neurologist, which made me reluctant to take this on, but right from the beginning something didn’t seem right. I had never heard of a case of dystonia that looked anything like the above, particularly the part where walking backwards reversed (if you’ll excuse my word choice) her jerky motions or where she could run but not walk. Moreover, it seemed highly unlikely that a vaccine could cause such a problem. However, I didn’t have the expertise to take this on; so I waited a while in the hope that someone who does have the expertise would do so eventually.

The movements and symptoms that Ms. Jennings displays on the public videos I have seen (linked to above) are not compatible with the diagnosis of dystonia, or any other movement disorder. Dystonia is one type of involuntary contraction of muscles. It can be reduced or exacerbated by certain movements or positions, and there are “task specific” dystonia, such as writer’s cramp, that come out only with certain activity. Jennings does not display the type of movements that are consistent with dystonia. Her speech and movement are, however, very suggestive of a psychogenic disorder.

Because of the concern of individuals with dystonia as to whether or not to get a flu shot because of this reported case, we have sought the opinion of dystonia experts on this case. Based on the footage that has been shared with the public, it is their unanimous consensus that this case does not appear to be dystonia.

The one news report that I saw that actually consulted an expert for their opinion was Fox News. Leigh Vinocur, and emergency room physician, was interviewed and relayed the opinion that the neurologists she consulted were of the opinion that Jennings’ symptoms were consistent with a psychogenic disorder. In other words – her symptoms are not neurological, they are psychological. This does not mean she has any insight or voluntary control over her symptoms – they are involuntary and “real” – just not neurological in origin. Symptoms such as this are not uncommon reactions to emotional stress in some individuals. Given the evidence presented, I think this is a reasonable opinion.

Here’s the report in which the emergency room physician mentioned by Steve discussed her case, coming, from all places, FOX NEWS:

I notice that the interviewer kept trying to badger the doctor into admitting that the dystonia was caused by a flu vaccine. It’s highly unlikely that it was. Then there was another video in which Dr. Stephen Grill from the Parkinson’s and Movement Disorders Center of Maryland describes why Jennings almost certainly doesn’t have true dystonia:

Finally, here’s a good video that looks at all the possibilities, from the dystonia being psychogenic to its actually having been caused by the seasonal flu vaccine, and concludes, quite reasonably, that even if the dystonia were caused by flu vaccine it’s the first such reaction ever recorded. Even in that worse case scenario, it would be a reaction that was not just one in a million but one in many, many millions and thus a statistically negligible risk compared to the risk due to the flu:

Don’t get me wrong. I do feel sorry for Desiree Jennings, whether her dystonia is psychogenic (by far the most likely possibility) or not (far less likely based on the videos of her movements that have been circulating on television and online), whether it was caused by vaccines (incredibly unlikely) or not (the most likely scenario). “Psychogenic” does not mean she is crazy or mentally ill, and does not mean she is faking, although the anti-vaccine loons who point to her as “evidence” that the flu vaccine is harmful will almost certainly caricature this argument as a heartless dismissal of her symptoms as her “faking.” It also does not mean that she can control her motions. The mind is very powerful, and she is likely not even consciously aware of what is going on. Moreover, I am not trying to diagnose her. I’m not a neurologist. However, as others have pointed out, she has placed herself in the public domain, and videos of her movements and interviews with her are being circulated far and wide to promote the idea that the flu vaccine is what caused her problem. What she has placed in the public domain and what others have said about her are fair game for discussion, as far as I’m concerned.

So is her exploitation by the anti-vaccine movement.

Unfortunately and predictably, J.B. Handley and Generation Rescue have taken on the “vaccine injury” case of Desiree, promoting it as “evidence” that the seasonal flu vaccine (and, by implication, that the H1N1 vaccine) is not safe. Even more cynically, Generation Rescue’s spokesmorons Jenny McCarthy and Jim Carrey have “reached out” to Ms. Jennings. This is such an astonishingly cynical move, even by the usual low bar that J.B. Handley sets for cynical moves. This would be true regardless of whether Ms. Jenning’s disorder is psychogenic or not–or even if it is ultimately linked to the seasonal flu vaccine. Handley’s using Jennings for his own purposes in order to promote the idea that vaccines cause autism; he almost certainly cares little for her suffering except as far as he can use her case for his own purposes. His interest in her is likely pure exploitation and how he can use her story to frighten people about the flu vaccine. If Ms. Jennings’ disorder is psychogenic, then Generation Rescue looks even more cynical, because all the attention she is getting for her story, thanks to credulous news reporters and Generation Rescue, could well be providing positive reinforcement for her psychogenic disorder and keeping her from undergoing what could be potentially effective therapy to eliminate her psychogenic dystonia.

One day after our story aired, Generation Rescue, an organization founded by actors Jenny McCarthy and Jim Carrey , reached out to Desiree.

“They are extremely helpful,” Desiree said. “They have a lot of doctors that deal with vaccine interactions, and they have sent us so many other stories similar to mine. Unfortunately a lot of theirs are with children, which is worse. I can understand it happening to an adult, but not a little child that hasn’t had a chance to live their life and can’t speak, so I want to speak. They can’t, and I want to help them, too,” says Jennings.

As I said, Generation Rescue was breathtakingly cynical in how amazingly fast it leapt upon this story to link it to its promotion of the myth that vaccines cause autism. No doubt doctors or practitioners recommended by Generation Rescue will use their usual quackery (i.e., “biomedical therapy” for “vaccine injury”) to “treat” Ms. Jennings. If and when her psychogenic dystonia spontaneously resolves, they will declare victory and use that resolution as “evidence” that her dystonia was due to “vaccine injury.”

Just wait. That’s the next story. I predict it will arrive before the end of the year, spring at the latest. Either that, or Jennings’ story will fade away if Generation Rescue doesn’t get any traction from it. Or maybe she’ll end up on Oprah’s show within the month. (November is a sweeps month, after all.) In the meantime, I can only demand of Jenny McCarthy, Jim Carrey, J.B. Handley, and Stan Kurz:

Have you no shame?

On going back to look at some of the links again, I begin to wonder if maybe they do have some shame, after all. The link to Desiree Jennings’ page on Generation Rescue that was touted on Age of Autism is no longer functional. The page has apparently been removed. I wonder why.

Maybe J.B. Handley does have a sense of shame, after all. He should. Then again, maybe not. After all, he thought nothing of using sexist slurs against Amy Wallace, and AoA is still promising an “update on her condition soon.” Maybe the update will include an explanation of why Generation Rescue so quietly removed its support page for her, and maybe Generation Rescue will explain why, if it is an “autism advocacy” organization rather than an anti-vaccine organization, it spends so much verbiage on the flu vaccine and the HPV vaccine, when neither could, even in the most fevered imaginations of anti-vaccine loons, be linked with autism.

ADDENDUM:Steve Novella has provided a followup to his original post this morning. It looks to me as though Generation Rescue was so anxious to jump all over the Jennings story to promote its anti-vaccine propaganda that it is now having to backpedal furiously as more and more information comes out that strongly suggests that Desiree Jennings does not have true dystonia after all:

Poor Jenny was in tears, and Kurtz was ready to help by unleashing anti-vax quackery to treat Jennings.

But then Kurtz and Generation Rescue ran into a real patient advocacy group – Rogers Hartmann and dystonia activism. Hartmann runs an independent dystonia charity, lifewithdystonia.com. It was clear to Hartmann (as it was to anyone sufficiently familiar with dystonia) that Jennings did not have dystonia. She called Fox and Stan Kurtz – and then the furious backpedaling began. Until then Coffey had accepted the story at face value, without any journalistic due diligence in evidence. When she learned that perhaps she had been snookered, the panicked calls to Hartmann began.

It was not until after Hartmann became involved, and the e-mails and phone calls of many other dystonia activists putting pressure on Fox, did they do follow up reporting, such as interviewing Dr. Stephen Grill about dystonia and the fact that Jennings does not have it.

It was also due to Hartmann that Generation Rescue was (partially) saved from its own stupidity and zealotry. Stan Kurtz was going full-steam ahead, as if Generation Rescue had the expertise to diagnose and treat vaccine-induced dystonia (an entity never reported in the medical literature). And then (after being contacted by Hartmann and having the truth of the matter explained to them) suddenly and without a word, Generation Rescue backed away from Jennings and took down the web page.

What a shock.

It looks to me as though Stan Kurtz and J.B. Handley got caught with their pants down. On the other hand, as I mentioned in the main post, as of this morning, AoA is still hyping the story. They even promise “to update you on her condition soon.”

I can’t wait for that “update.”

It looks to me as though someone at AoA didn’t get the message after Generation Rescue took down the links to its “help Desiree” page, which is hilarious, actually, given that AoA is a wholly owned subsidiary of Generation Rescue–its propaganda blog, if you will. It’ll be very interesting to see what J.B. Handley and Stan Kurtz say about the case if they ever post about it again. Does anyone want to take any bets over whether J.B., Stan, Jenny, and Jim ever admit their mistake? I’d bet no, but then that’s about as safe a bet as betting that the sun will rise tomorrow morning.

Unfortunately, none of this new information stops the true believers, as evidenced by this comment after this morning’s post at AoA:

Some times I think that there are some evil scientists behind these vaccines and they are rubbing their hands together in glee as they carefully mix up some kind of concoction to just see what effect it is going to have on the brain?!!!

Against such willful ignorance and suspicion beyond all reason, the gods themselves would contend in vain.

94 Comments

28 freaking years old and aspiring to be a cheerleader? Are you freaking kidding me??? What’s the matter – was the local junior college secretarial program full??
I think my cocker spaniel has more ambition.

Thank you for commenting on it. I was sad to see so many people having links to this video on their facebook (I have had to hide certain friends feeds in the past by the amount of pseudoscience articles they were posting, even reading the titles made me do a facepalm) . Luckily being the type of person who doesn’t take Inside Edition as a reputable source of information, I looked further and when I saw the Dystonia Medical * (forgot the rest of the name) had never seen a case of dystonia caused by vaccination. Anyway thanks for adding the additional information you received and I hope Desiree heals and gets the proper treatment she needs.

I have made comments on the aoa asking about why they seemed to talk to much about late childhood and adult vaccine’s if they were concerned with autism. The answer I got was mainly along the lines of (and I am paraphrasing here) “If you don’t get why, maybe you should leave”. Of course the real reason is that they feel if they can discredit one vaccine they discredit them all.

Just like those doofuses who are scared shitless of microwaves – ’cause, you know, it irradiates food. Never mind that conventional cooking and most especially deep frying tends to produce way more carcinogenic compounds in food. But what do I know, I’m just a poor chemist.

And now this: here we are having a rush of people who, scared of getting the flu, are rushing to get the vaccines that are destined to medical personnel and the vulnerable. Stealing from the most at risk. ’cause, you know, their lives are worth just as much as those pesky doctors, nurses and chronically ill people. And it doesn’t matter if chronically ill people die, they would have died anyway.

First, they don’t want the vaccine, then, when they suddenly realize that, yes, some healthy people do die from the flu, they’d steal it from those who need it most.

I have made comments on the aoa asking about why they seemed to talk to much about late childhood and adult vaccine’s if they were concerned with autism. The answer I got was mainly along the lines of (and I am paraphrasing here) “If you don’t get why, maybe you should leave”.

“Of course I know why, but I just want you to admit you’re real agenda”

Generation Rescue used to have a link to donate to Desiree and prominently displayed the video link, but that is all gone. I wonder how much money was donated for this cause? As a special educator I have seen numerous “programs” of questionable efficacy offered over the years to give hope to parents of kids with all kinds of disabilities with the primary impact being a separation of the parents from their money. Has anyone addressed the economics of the Anti-Vax crowd? How much money is Jenny making from Generation Rescue? I would be happy to hear that she makes nothing off of it, but I would like to know.

“The anti-vax crowd is just scared – they have no idea what they’re scared about, and don’t want to know, they’re just scared. ”

Well of course. Then they’d have to admit they don’t know something. And I’m not being flip when I say that. It’s *very* hard to admit that there are things we don’t know. It’s probably the single biggest reason why the scientific method is so necessary. We don’t like not knowing things, and the scientific method is, at heart, an acknowledgment of the fact that we inevitably remain ignorant about a great many things. It’s so much easier, so much *clearer*, to just grasp the first seemingly plausible answer that comes your way, and not do the uncomfortable thing of questioning it.

@1 your comment has nothing to due with the vaccine. I had a good job, good pay, and learned alot from my years as a pro cheerleader. I now own a very successful dance studio and gymnasium. I was able to attend college with the money I made from cheerleading. I also raised 4 children and was able to contribute (more)financially than my husband’s military pay. shame on you.

Jennings should sue AOA and any other anti-vax organization she can get ahold of. I can’t imagine that she would have had a spontaneous conversion reaction to the vaccine if she hadn’t been bombarded with propoganda about how dangerous it is.

My sociology professor was offering extra credit to those who received the H1N1 vaccine. Unfortunately, a classmate questioned her on this very story and asked if the vaccine was “safe” (I’m paraphrasing here). She responded that the statistical risk for whatever Desiree has is extremely low compared to the risk of getting H1N1 influenza, but I’ll be sure to provide her with this added information.

Does this affliction come and go? Could she be outright faking it? I’m a suspicious cynical person I know,I know; but her hair and make up are picture perfect(did her husband do that for her?) and in a couple of scenes she adjusts her hair/tucks it behind her ear.Those seem to require some pretty precise motor skills.

Personally, I’m just shocked that Fox News got something wrong. This flu season is going to be a windfall for the anti-vaccine nutjobs. And lawyers, I presume. Any time a child shows symptoms of something unrelated to the vaccines, we’re going to hear about it. Orac is going to have to get his typing fingers in good shape this fall.

Michael Simpson: “This flu season is going to be a windfall for the anti-vaccine nutjobs.”

No matter what happens, the antivax spin is already prepared. If we have average numbers of flu cases, the antivaxers will declare it proof that there was never any threat and that the warnings were ginned up to benefit Big Pharmavax. Substantial increases in flu cases (such as we are already starting to see), complications and deaths will either be dismissed as Guvmint/Pharma propaganda or as proof that vaccines are worthless. Every bad thing that happens to people who got flu vaccines, no matter how obviously unconnected to the shots, will be blamed on vaccines. Flu deaths and accompanying serious injury will be minimized or ignored.

“One day after our story aired, Generation Rescue, an organization founded by actors Jenny McCarthy and Jim Carrey , reached out to Desiree.”

How many victims of influenza and family members have Jenny and Jim reached out to?

I have to wonder if it’s just a matter of time before some antivaxxer adds to his or her screed about the dangers of vaccines the claim that “it’s well-known that they can induce psychogenic illnesses!”

These are the facts folks, all information is derived from Center for Disease Control and Prevention, the National Institutes of Health, the National Institutes of Allergy and Infectious Diseases and the New England Journal of Medicine.

Djay, I took a look at the site and listened to Dr Blaylock. I was not impressed. If I had kids I would definitely pay attention to this:
“The Centers for Disease Control updates key flu indicators every week. At the end of last week, the report noted that deaths associated with H1N1 and pneumonia has been higher than expected for four weeks now. Another 22 children died from the flu this past week, at least 19 of them confirmed to be H1N1. The total since April of pediatric flu deaths is now 126.
I am not sure if the deaths due to pneumonia are directly from the virus, or from opportunistic bacteria. If the latter it may be worth taking the vaccine pneumovax. Though I rather suspect you think vaccines are dangerous.

SAILOR obviously you didnât read the material. There is no way the CDC can say they are confirmed H1N1 because they no longer do subtype testing of influenza A. The stopped this in August. No I am not against all vaccines only the H1N1 super hype vaccine that is blown out of proportion based on the facts provided

Crikey. My kids brought home flyers from school today purporting to have been written by “Dr. Vinay Goyal” about swine flu. “Dr. Goyal”s advice to “prevent proliferation, aggravation of symptoms and development of secondary infections” include gems like “clean(ing) your nostrils at least once a day with warm salt water is very effective in bringing down viral population” and “Gargle twice a day with warm salt water (use Listerine if you don’t trust salt).” Apparently this is some scam that has been making the internet rounds for a few months now: http://urbanlegends.about.com/od/medical/a/dr_vinay_goyal_swine_flu.htm

H1N1 is sweeping my community. Scores of kids and teachers are out sick. Of all the helpful information they *could* have sent home, I’m just gobsmacked that this unreferenced, unhelpful piece of tripe is what made my school administrators chose to disseminate. Yes, the principal has already received my sternly worded email of complaint, but I just wanted to vent here, too.

When I first heard the story, I was skeptical. The more I’ve learned, the more skeptical I’ve become. I agree with Orac that this patient has a psychogenic condition that likely will respond to tincture of time.

djay, the H1N1 subtype would have been folded into the usual seaonsal flu vaccine if there was more time to do this. There wasn’t, thus two vaccines. This is my understanding and if I am somehow incorrect, please point me in the correct direction.

As for the H1N1 superhype, between September 1 and October 30, Oregon had 698 hospitalizations secondary to influenza with 18 deaths (in a population of about 3.5 million). That’s a 2.5% death rate. Between April and August, Oregon had 116 hospitalizations and 11 deaths. That’s a 9.5% death rate. I don’t think that the vaccine is overblown or superhyped. I’m just frustrated that I can’t give it to the people I want secondary to short supply.

My state health department puts out a biweekly newsletter at oregon.gov/dhs/ph/cdsummary. The one from September was about Guillain-Barre Syndrome and the flu vaccine. It’s a pretty good summary of the risk of GBS from the flu vaccine including a statement that some cases of GBS will follow vaccination by chance alone. These summaries are very easy to read, backed with sources, and sometimes LOL funny. Seriously.

That isn’t true. The reason the CDC has stopped subtype testing for influenza A is that virtually every rapid test was coming back positive for H1N1. And subtype testing is absolutely being recommended in cases where the patient is hospitalized or died.

But I’m not surprised that anti-vaccine views and the truth are mutually exclusive.

“There is no way the CDC can say they are confirmed H1N1 because they no longer do subtype testing of influenza A.”

The CDC gets reports on flu incidence from around the country. Testing for H1N1 is ongoing on the local level and while my understanding is that available tests are not tremendously sensitive (i.e., H1N1 is likely being underdiagnosed), testing by the CDC itself would not be necessary for compiling of statistics on H1N1 incidence.

I wonder if it’s worth trying to educate journalists that you should not run a story about someone’s mysterious medical disorder if you’re not getting the information about the disorder from the actual doctors. In a reasonable world it would be a minor scandal that this “news” show informed viewers “Desiree’s doctors say this, Desiree’s doctors say that” and now it appears that not a word attributed to them came from the doctors themselves.

Jennifer, yeah, there’s so much better info that could have come home with your kids. I’m sorry. That’s a pretty epic fail. Then again, if you live in Portland, it has the National College of Naturopathic Medicine and the College of Oriental Medicine. OHSU has an integrative medicine fellowship and their new building is called the Center for Health and Healing. It’s just part and parcel of the split personalities in the state and somehow does not surprise me.

“If and when her psychogenic dystonia spontaneously resolves”
From everything I’ve read about psychogenic illness, this doesn’t happen. Without psychologically-based treatment, the most likely to happen is cycles of “remission” when mood improves. Ironically (as I’ve pointed out in an unpublished paper on “faith healing”), it could easily prove harder to cure a psychosomatic illness than an actual biological one.

Why would it be so flaming wrong if she is mentally ill? Why whenever something mental comes up do people have to hysterically deny the possibility that someone may have a mental illness?

This always happens with anything brain-related – neurological, psychogenic, whatever. Just in case we ever needed reminding that those of us with mental illness are the lowest of the low, the conditions that no-one even wants to contemplate having.

First, I do want to thank you for not using quotes around “real” referring to psychogenic illness the way the section you quoted did – psychogenic disorders are real, the brain is an organ, and can have issues like any other organ.

However, like #42, I’m not as happy with your “[this]does not mean she is crazy or mentally ill”. Demonization of mental disorders in casual ways (“she’s this, but at least she isn’t *that*”-type phrasing) doesn’t do people who live with mental conditions any favours.

I’m in Brain Injury research. I’m a lowly research assistant, but I see cases of even mild brain trauma that can result in years of psychological issues. The special horror of “crazy” that society exhibits in even casual conversation has, for years, prevented people with debilitating psychological issues from seeking help, for fear of the stigma that mental illness carries.

It’s a drop in the bucket, I know, but every little bit of rephrasing helps to reverse the ostracization and separation from society that mentally ill people experience daily as a result of people thinking of mental illness as somehow different from any other illness.

* Begin in a single region, such as your foot or hand.
* Occur with a specific action. For example, you may experience involuntary contractions in one leg when walking forward, but not when running forward or walking backward.
* Worsen with stress, fatigue or anxiety.
* Plateau within a few years.

Symptoms commonly begin with a specific action, that is, the abnormal movements appear with a specific action, and are not present at rest. For example, if it begins in one leg, the symptoms may be present only when walking and disappear when the child runs or walks backwards.

In generalised dystonia that begins in the arm, symptoms may be task-specific, apparent only during the act of writing or playing a musical instrument. If the disorder progresses, the symptoms of arm dystonia may appear when another part of the body is engaged in voluntary motor activity. If the dystonia spreads to involve parts of the body other than the limb of onset, it will first move to adjacent segments of the body, and then more distally.

Dystonia is usually present continually throughout the day whenever the affected body part is in use and may disappear with sleep.

* Begin in a single region, such as your foot or hand.
* Occur with a specific action. For example, you may experience involuntary contractions in one leg when walking forward, but not when running forward or walking backward.
* Worsen with stress, fatigue or anxiety.
* Plateau within a few years.

Symptoms commonly begin with a specific action, that is, the abnormal movements appear with a specific action, and are not present at rest. For example, if it begins in one leg, the symptoms may be present only when walking and disappear when the child runs or walks backwards.

In generalised dystonia that begins in the arm, symptoms may be task-specific, apparent only during the act of writing or playing a musical instrument. If the disorder progresses, the symptoms of arm dystonia may appear when another part of the body is engaged in voluntary motor activity. If the dystonia spreads to involve parts of the body other than the limb of onset, it will first move to adjacent segments of the body, and then more distally.

Dystonia is usually present continually throughout the day whenever the affected body part is in use and may disappear with sleep.

You’d figure that Novella would read up on all of the literature and at least know what he was talking about. But hey, what can you expect from people like you, David?

@1 your comment has nothing to due with the vaccine. I had a good job, good pay, and learned alot from my years as a pro cheerleader. I now own a very successful dance studio and gymnasium. I was able to attend college with the money I made from cheerleading. I also raised 4 children and was able to contribute (more)financially than my husband’s military pay. shame on you.

And kudos to you for doing that, but I think what TGAP Dad was referring to was that this gal, at 28, is still only *aspiring* to be a cheerleader. She isn’t a cheerleader yet. I don’t know what the median age for pro cheerleading is, but I would think you’d need to get your career started somewhat earlier than age 28, given the athletic demands of the job.

Not sure THIB (Silly Sue) is whining about. Steve didn’t use the woman’s condition for fun & profit the way GenR did. Shameful exploitation is the anti-vax thing I guess.

Shit happens all the time. Sometimes just before you get a shot, sometimes after, sometimes with no relationship to the shot at all. Because you want a relationship, you make one. Another scam well played.

THIB – I treat dystonia. I don’t need to read the Mayo clinic’s website for distilled public-friendly information. You are essentially quoting a text book at me.

If you actually ready my blog post, you will see I gave a quick summary that is essentially the same as the Mayo Clinic’s. But you are making a very naive and superficial comparison between a text-book description and Jenning’s symptoms as displayed on the video – much like people who diagnoses themselves off the internet.

What I am saying is that an experienced clinical eye with proper attention to details and a thorough knowledge of what various movement disorders actually look like can tell true dystonia from a psychogenic movement disorder.

But I will also reiterate the caveat I put on my post – I have not examined her, and I cannot make a definitive diagnosis or treatment recommendation. I can only give my impression from the video that was placed in the public domain. And I can state that every movement disorder expert who has commented publicly agrees this is not dystonia.

Callie @45, age didnt matter for me, but even if it did, trying to explain Dad’s petty comment still doesnt make it pertain to the issue. sorry, I guess making assumptions strikes a nerve with me. I may have graduated with a biomedical engineering degree(I’m here for the science), but I always had aspirations of being a pro cheerleader (history of competitive dancing, cheering, 3rd degree black belt, and valedictorian). So, let’s just say I wasnt a spring chicken when I made the team (and already had the first kids too). After cheering, I went back for a business mgt degree, and the rest is history. btw, 2 of my dancers are competing in the top group for the ‘So you think you can dance’ show. Many votes to them!

Ok, Steven. Let me get this straight. You make broad generalizations about her condition, saying it is psychogenic, just from watching her video but without looking at any of her charts or medical records and say it is not Dystonia, thereby implying that you know more than all of the Doctors at the Mayo clinic who were treating her, so you spread obvious misinformation saying that it isn’t dystonia simply because her symptoms somehow link to a vaccination. That about sum it up?

I expect such blatant disregard for the Hipocratic oath and the scientific method from David, but I had higher hopes for you, Steven. Sadly, you have proven me wrong on that aspect.

As I seem to recall, Sue, NO ONE is saying she has dystonia any more, except for the media. Dystonia, if I recall correctly, was simply her initial “working diagnosis” (ask any medical person – when a diagnosis is not certain, you start with a working diagnosis and may change/refine that diagnosis as you get more test results – Gee, it’s like science!) Many well qualified doctors, not just Dr Novella, are saying it appears she has a psychogenic disorder. Orac phrased the information exactly correctly as did Dr Novella.

THIB Sue,
You are shoveling shit about Dr. Novella while being part of the vast anti-vax lunacy promoting horrific vaccine preventable disease. Go choke on your vitamin D and elderberries. History will show you for the charlatans you are.

As for Ms Jennings, how about the blatant disregard for HIPAA? Where is the link to the flu shot other than the coincidence of time (and the short circuit in your brain)?

All right, for anyone who still thinks Desiree Jennings has dystonia, here’s what you can do to push me closer to believing it:

Find a news source on this story where a named doctor is directly quoted as saying they examined Jennings and diagnosed dystonia.

I’ve been looking for it; I haven’t found it.

Here’s what does not count:

* A named doctor who talks about what dystonia is but who never says they diagnosed Desiree Jennings with it.
* A claim that merely says it was “doctors at the Mayo Clinic” or “doctors at Johns Hopkins” who diagnosed Desiree Jennings with dystonia, but doesn’t actually name any of those doctors.

If there is a real doctor who really said to Desiree Jennings “you have dystonia” then I can’t think why Jennings wouldn’t say “Doc, I’m going to be on a national news program talking about my dystonia, I want you to be on it as well explaining to everyone what dystonia is.” On the other hand, if the doctors said “psychogenic condition simulating dystonia” and Desiree Jennings heard “dystonia probably caused by a flu shot” then the coverage would be pretty much exactly as I’ve seen it: named doctors talking about what dystonia is; claims that “doctors at $INSTITUTION” diagnosed her with dystonia; no doctors actually being interviewed and saying “Yeah, she’s got dystonia”.

Am I the only one who thinks this “it’s not really dystonia” “it is too” discussion is missing the point? Even if it IS dystonia, what evidence is there to suggest that it has anything to do with a flu vaccine? Just because she got the vaccine, and then got it?

I admit that I don’t know anything about dystonia, so things I would like to know: how common is it? Who normally gets it? When do they get it? (think of the MMR/autism connection; because autism normally becomes apparent after the time of an MMR shot, it gets blamed) Are there any known causes that might make someone think it has something to do with a flu vaccine?

Even accepting the claims at face value, you have to establish something more than just a post hoc ergo propter hoc description. If you don’t, then this claim is about as meaningful as all those people who claim the flu shot gave them the flu, which we know can’t happen but is claimed anyway.

To add to what you said, even accepting that it is dystonia and accepting the supposition that the vaccine did cause it, what is the relative risk? This is one case out of how many? Likely significantly more remote than 1:1,000,000. And, even assuming 1 in a million odds of dystonia from the vaccine, what are the odds of serious injury or death from influenza itself? Rather higher, I’d guess (don’t have the odds ratio to hand atm).

I don’t think the focus on whether Desiree Jennings actually has dystonia is missing the point; it’s concentrating on the point where we are more likely to win a decisive victory.

There is of course a lunatic fringe that will believe the worst, in the face of all the facts, because it’s what they want to believe. But let’s ignore them; let’s focus on those who can be convinced by reason but don’t have the scientific background to be able to recognize for themselves who’s got the facts and logic on their side.

If we press the point that they can’t prove any connection between the flu vaccine and Desiree’s condition, and that furthermore our scientific understanding says there’s highly unlikely to be any connection, we might think we’ve won. But in fact we’re going to sound, to the people we’re trying to reach, just like the pseudoscience bozos who are saying “Those Big Pharma shills can’t prove that there isn’t a connection between the flu vaccine and the awful thing that happened to this poor girl! Furthermore, my scientific understanding says it’s almost certain that there’s a connection between the two!”

On the other hand, if it turns out that Desiree Jennings’ dystonia does not have any connection to the flu vaccine because Desiree Jennings doesn’t have dystonia and never did, it’s that much easier for us to make the point that a lot of what you hear about the flu vaccine and the supposed dangers of it aren’t based in reality.

Dystonia is very rare, much more rare than ASD. Age of onset can apparently be anything.

Let’s see. The incidence of generalized dystonia is apparently 2 per million per year, and the incidence of all focal dystonias combined is 24 per million per year (Nutt et al. 2004.)

I’m going to pick the lower figure to be conservative.

It translates to 0.05 cases per million every 10 days. If we were to pick a person at random from the population, the probability that they’ll get dystonia within the next 10 days should be 5×10-8, correct?

This means that every (5×10-8)-1 persons you pick at random should get dystonia within the next 10 days. That is, 2×107 persons, or 20 million.

Imagine that giving someone a flu shot is like picking a person at random. Then, for every 20 million doses of the flu shot, you should find one Desiree Jennings by chance alone.

How many doses of the flu shot are given every year? Who knows, but the CDC has said they might need up to 600 million doses of the H1N1 vaccine (CNN).

I believe Orac mentioned that even if it were determined that this was Dystonia, and it was caused by a vaccine, it would literally be a one of a kind reaction. It would be the first such reaction in the history of many, many millions of vaccines administered.

The risk of Dystonia would be overwhelmingly outweighed by the risk of death due to influenza.

Interestingly, the risk would also pale in comparison to the risk of loosing your sense of smell from using the so labeled Homeopathic cold remedy Zicam.

Apparently a new term has been invented at AoA (at least it’s new to me), in the comments to the latest dystonia story. The great Craig W. has referred to “Oraccolytes,” as if we couldn’t see through their bullshit before.

I have a pregnant step daughter in law. She has an ob-gyn who is recommending against the H1N1 vaccine and the poor girl is thinking Jenny McCarthy makes sense. I sent this email a few minutes ago when I heard this:

There are 3 H1N1 vaccines.
Flumist with no thimerosal.
Single dose shots with no thimerosal. (recommended)
Multi-dose vials with thimerosal.

Thimerosal, a preservative made with ethyl-mercury which is rapidly flushed from the system, has NOT been shown to have any link to autism. Thimerosal was removed from most vaccines in the 1990s while the risk of it was evaluated. During that time the autism rate, which would be expected to go down as a result, did not. Not at all. The major anti-vax groups, Age of Autism, Generation Rescue, Thoughtful House, et al are complete crap. They are anti-science sites designed to induce fear and kill people with rumor, innuendo and stupid.

Andrew Wakefield proposed in a 1998 Lancet article that the MMR (measles, mumps, rubella) vaccine was linked to autism. He faked data, accepted money from lawyers to fake results (so they could make money suing vaccine manufacturers) and was hoping to make a fortune by marketing a competing vaccine. The published study, from which 10 of his eleven co-authors have withdrawn their support is complete crap. He is under investigation by the GMC (UK version of FDA) for serious medical practice violations as a result. The GMC ruling on his ability to practice medicine is due out in the next month or so. I expect he will lose his medical license. Here is part 1 of 3 of the Wakefield (asshole) saga by investigative reporter Brian Deer (hero):http://briandeer.com/mmr-lancet.htm

Jenny McCarthy is a (bad) actress. Her medical training is from Google University. She feels that motherhood gives her more insight and authority than anyone else with a medical degree. Rubbish. She is evil. Her efforts to date are estimated to have killed 265 and injured over 50 thousand. This is due to many factors but mainly reduced herd immunity resulting in the resurgence of vaccine preventable disease.

Here is a science blog site that regularly tears down the anti-science, anti-vax, stupid:http://respectfulinsolence.com/
I read and comment here regularly. Orac is marvelous. Other science bloggers also work at this but he’s the best and most thorough.

Basically, Wakefield started this scare in 1998. Since then every effort of science to disprove an autism link is countered by the anti-vax asswipes moving the goalposts. First it was mercury which has been shown to have no effect. Then it was ‘too much, too soon’ with no evidence to support such a claim but resulting in increased exposure to disease for babies least able to defend themselves (or tell you what hurts).

If you want to believe in woo and natural crap, go ahead but you are being fooled. Some practitioners may truly believe and snag you that way. Most are just con men and scam artists who want your money. Either way, you lose. Nothing in medicine (or life) is 100% safe and guaranteed. You must play the odds. But I’ll take the odds that vaccine preventable disease is much, MUCH worse than anything they imagine vaccines might cause. When you listen to woo, you risk mumps, measles, smallpox, tetanus, whooping cough, HIB, polio, and deadly flu. They are all horrible, debilitating diseases that can kill and can be prevented at VERY low risk.

Ugh. Jenny, D rate actress versus science and medicine. Don’t put your faith in her or homeopathy or ancient Chinese herbs. If they worked, science would make them into medicine. There is no conspiracy and no truth in the ant-vax claims. They may feel right but are very, very wrong.

I realize I was ranting a bit but I was upset. Any other rational approaches or sources of info would be appreciated. I hope she comes here and I truly do hope she’ll listen.

I don’t think the focus on whether Desiree Jennings actually has dystonia is missing the point; it’s concentrating on the point where we are more likely to win a decisive victory.

I am not convinced. This whole “diagnosing from video” reminds me way too much of Bill Frist diagnosing Terry Schiavo based on media footage. We know how well that went over.

I still think the better approach is to concede, for the sake of argument, that it is true and then show that even if we do, it is meaningless. Something like Joseph’s analysis, without all the scary math. Shoot, notice that Joseph used the conservative estimate. Using the full range, we could argue that there should be approximately 1 case of actual dystonia that develops within 10 days of a flu vaccination for every 2 – 20 million vaccines given, given no causality at all. Find out how many flu shots are given, and then say, “Not a surprise that someone came down with it at all”

Trying to re-diagnose based on video sounds way too much like someone is scared of the diagnosis. It doesn’t matter in the least, it means nothing because of the reasons Todd and I mentioned.

“I still think the better approach is to concede, for the sake of argument, that it is true and then show that even if we do, it is meaningless.”

I don’t agree. I don’t believe in conceding any point not supported by credible evidence. We may as well concede that vaccines cause autism, but the benefit outweighs the risk. Getting into a discussion of risk verses benefit is a waste of time unless the risk has been established as real. This is the trap the anti-vax side constantly tries to draw us into. They lead us into the bogus arguments of “green our vaccines”, “too many too soon”, and about how if the cost of safer vaccines is a deadly pandemics, than that’s the fault of big pharma and close minded scientists and doctors.

If this woman has been diagnosed by her doctors as having Dystonia as she claims, and she has chosen to make this information public as she has, then let her release her medical records and allow her doctors to comment publicly on her condition. Until then, her claims are unsubstantiated anecdote and deserve only skeptical rebuttal.

Two things that bear a superficial resemblance can be quite distinct and different.

I believe Terry Schiavo’s doctors were allowed to discuss their findings with the media; Micheal didn’t just go on camera and say, “Trust me, the doctors say she’s hopeless, but you can’t talk to the doctors.”

Also, I would guess that diagnosing Dystonia from video of the patient is very different from diagnosing a PVS from video, but a neurologist can commnet better on that.

RE: my last comment, I realize that you were likely advocating conceding that she had dystonia, and not that she had it and it was caused by the vaccine, but my point is to never give ground unless it is warranted; concede only facts.

I realize that you were likely advocating conceding that she had dystonia, and not that she had it and it was caused by the vaccine, but my point is to never give ground unless it is warranted; concede only facts.

I wouldn’t concede anything. Assuming for the sake of argument is not conceding anything.

Another problem with the “it’s not dystonia, it’s actually XXX” approach is that all it does is give anti-vaxxers the chance of saying, “Oh well, then you are admitting XXX is caused by vaccines! Ha!” It doesn’t matter what she has – there is no basis for attributing it to a flu vaccine. So quibbling over what she does or doesn’t have is a waste of time.

October 30, 2009 (Philadelphia, Pennsylvania) â Mounting evidence shows that immunizing pregnant women for seasonal flu benefits not only the mother, but also the infant, and even the fetus. Studies presented here at the 47th Annual Meeting of the Infectious Diseases Society of America showed that maternal influenza vaccination reduced rates of prematurity, low birthweight, and flu-related hospitalization of infants, including those younger than 6 months of age.

I am not convinced. This whole “diagnosing from video” reminds me way too much of Bill Frist diagnosing Terry Schiavo based on media footage. We know how well that went over.

I actually had this same thought, but remember that these two situations are fairly different. Bill Frist (who has otherwise been a nice, reasonable guy) is a transplant surgeon who was attempting to diagnose a neurological condition based on video. At least Steve Novella is the correct specialty to handle this sort of case. Also, the Terry Shiavo case was far more prominent than this, had been going on for much longer, and had been subjected to far greater scrutiny. The possibility of Shiavo’s doctors being wrong was far less likely.

Still, I don’t really know what to make of this case. I think the media has been too quick to latch onto it without considering the obvious fact that when you vaccinate huge amounts of people certain conditions will correlate with the vaccine even when there is no true casual relationship.

I’m not a neurologist, but I am a psychiatrist, and so prescribe medications that can unfortunately sometimes produce dystonia – so I do have at least a passing familiarity 😉

Forget the video: simply from the description this was clearly not a dystonia. It was something odd, yes, but not a disturbance of the muscular tone. Able to run … but not walk … except backwards? Ummm … no. That was always going to be either psychogenic, or an Oliver Sachs-grade weird neurological thing that as Orac mentioned, has never ever been seen from a flu vaccine before. Ever, anywhere.

… Ok, Just watched the video (the first one) for the first time … yeah, well … ummm … I don’t mean to be nasty (hey, I’m supposed to be nice and touchy-feely, it’s in the job description :-p ) but come on! My initial reaction is my final one 😉

Sore throat, nasal congestions, followed by fever, body aches, chills, and headache.10/8/08 Medical records received, Dates of Service 10/2-10/3/09. Diagnosis: Weakness. Pt. experienced sore throat, congestion, body aches, chills, headache, fatigue and fever 3 days after receiving the influenza vaccine. The fatigue continued for almost 2 weeks during which the patient continued to work, but on 9/12/09 she presented to the ED with generalized weakness, lightheadedness and an episode of syncopy that was accompanied by generalized convulsions. Admitted to the hospital from 9/12-9/14/09. CK and LFT’s were noted to be significantly elevated. Returned to work on 9/17/09 and continued to experience nausea and syncope with all over trembling and was readmitted to the hospital overnight. On 9/21 her PCP told her she had a positive ANA and lupus. Pt. began experiencing chest pain, for which steroids were prescribed. She saw an Infectious Disease MD on 9/22 and had a lumbar puncture which was normal. Pt. began experiencing difficulty walking, chills, sweats, tremors and vivid dreams with difficulty sleeping. She began having headaches described as a “”cold spot”” on the back of her head, had subsequently developed a stutter, but was able to speak clearly if she whispered. Her symptoms persisted and progressed to erratic movements of the toe, intermittent uncontrolled blinking, difficulty focusing, uncontrolled shaking, cold feet and sharp pains in the legs. Upon this admission the plan was to rule out GBS, MS, malignancy, Lyme and MG. Pt. noted to have dystonia, speech dysfunction, gait dysfunction, anxiety, SOB, photophobia, tinnitus in the left ear, and increase in appetite, a 2 lb. weight loss. It was also noted that the symptoms were worsened by warm water, especially at the knees. The admitting neurologist felt that there was a strong psychogenic component to the symptomology, and made a final diagnosis of weakness. 10/13/09 Medical records received from dates 10/2/09-10/4/09 Presented to for eval of p (REDACTED)”

Glad to find this blog. Regarding diagnosing dystonia by video: Of course when we see patients in our offices, we take a full history, do a full examination and observe the abnormal movements. When we do so, we can organize the examination in ways to specifically question whether the movements are “physiological” or not. When observing a video, obviously we cannot do as complete an evaluation. However, we do this routinely at medical conferences. It is very different than examining someone for brain death where you really have to touch the patient. We can observe the video for clues. For example, the videos show that when she walked, she did so with knees constantly bent. This requires lots of strength and skill to keep from falling. She also on occasion criss-crossed her feet and this is a very unstable thing to do. That she can walk backwards better than forward is actually seen in true dystonia – there is a certain task specificity to dystonia. However, being able to talk normally when running is not seen in dystonia. The speech varied from video to video, usually being a stuttering type of speech – very unusual in adults, not dystonia, and usually psychogenic. There are more features to her that suggest a psychogenic disorder. In her case we actually had an advantage of lots of video at different times, something we do not usually get at conferences. So yes, we of course examine our patients but it is possible to judge that a patient has psychogenic symptoms from a video. We must be cautious in making the diagnosis because sometimes the psychogenic component obscures an underlying disorder. It was hard to go public on this but I felt that it was important from a public health viewpoint to get an honest opinion out there – one that I knew was shared by every other movement disorders specialist I spoke with. She was never evaluated by a Movement Disorders specialist. It turns out that the only reason this lady was made into a news story is that the FOX producer is also a cheerleader and a friend of Ms. Jennings. She did a disservice both to Ms. Jennings and to the public. What Ms. Jennings needs is LESS attention. The attention she gets from this prevents her from getting the psychological care she needs and creates a “secondary gain” that reinforces the condition.

@steveg
What are you talking about, she has had no history of mental illness and none of her symptoms resemble an anxiety disorder. And whats all this drivel about being able to tell what somebody who is brain damaged symptoms should be like? Severe head injuries and brain damage can cause all sorts of problems, look at Phineas Gage, once you damage the brain all sorts of different symptoms will pop up that do not affect everybody the same.

Micheal J Fox looks typically Parkinsonian, especially in his “Adventures of an Incurable Optimist” videos. He looks to be not very advanced, but in comparison to his previous state, his parkinsons symptoms are quite noticable and specific.

Ali is significantly more advanced, but to say they are ‘completly different’ betrays an ignorance of the wide range of symptoms that people with brain insults can have. I have to question whether your experience of Parkinsons is clinical or Googlian.

Did Ali when he was in the early stages of his disease (right after his last fight) display any of the severe full body jerks and involuntary movements Fox did? Why when Fox and Ali were both in the early stages display much different symptoms? One of them must have been faking! Ali never had the massive full body jerks Micheal J fox did when he was in the early stages! Call Rush Limbaugh!

Yes I did, and it’s irrelevant. Rush appears to have little to no clinical experience. I’m not even legally allowed to present my clinical experience in any way that could be interpreted as presenting myself as an expert, yet I appear to be significantly more experienced than the vasy majority of people who agree that Desiree has dystonia.

This is in contrast to the majority of people who have commentated that she presents atypically. This has included OT’s, PT’s, neurologists and people high up in dystonia support organisations.

Ali has tremor as well, and has been known as having such for years. His tributetoheroes video contains fairly typical tremors, which were also present – but less severe – in his 1996 atlanta appearance.

Both have fairly similar symptoms in relation to the breadth of symptoms that people with brain insults can have. Hence why both are diagnosed with the same condition.

My comment was meant to be snark on steroids. While I did implicitly attack the cheerleading profession – not too wise on further reflection – I really meant only to heap scorn on this woman’s lack of ambition. In common vernacular, she’s what we call a loser.

She’s 28, inarticulate, seemingly uneducated, and hopes, someday, to be a cheerleader. She probably has no real idea of how to get into professional cheerleading, nor any idea of what the lifestyle of a cheerleader is like. I’m speculating that her concept of a cheerleader comes from high school (if she got that far).

The fact that she is in her (late) 20s, and aspires to something for which her frame of reference is a high school extracurricular activity, tells us all we need to know. Deep in the recesses of her miniscule subconscious, the psychogenic “symptoms” provide her a way out: her cheerleading dreams came to an end because of dystonia. The vaccine then provides the trigger. My spidey sense tells me that she was sympathetic to the antivaxers, if not actually one of them, prior to the flu shot. Thus, her getting the shot despite these sympathies serves as her conscious manifestation of the act of giving up on that dream.

The antivax “support” group will certainly reinforce that from this point forward.

Parkinson’s disease is extremely variable in it’s presentation. There are probably several forms of PD. There is a “tremor-predominant” form where tremor is almost the only symptom. It may continue like that for 20 years. OTOH, about 30% of people with PD have no tremor. About 5-10% of the time it is genetic and several genes have been identified. There are very specific criteria to diagnose PD (UK Brain Bank Criteria). If these criteria are used by neurologists, there is over 90% accuracy in diagnosis (based on autopsy series). Movement disorders neurologists are almost 99% accurate. “Myoclonic jerks” (I have never seen Michael J Fox have them), are fairly common and essentially untreatable. Fortunately they don’t occur so often. MJF likes to stay a bit overmedicated to the point that he has “dyskinesias” (the movements Rush accused him of faking). In my experience, everyone with PD has their unique appearance. However, the common features are: Asymmetrical presentation, rigidity (stiffness), slowness and resting tremor (not always present). Finally, regarding Ali and MJF having the same area of the brain involved, well that is probably true but there are many areas of the brain involved in PD to variable extents. The first area affected in the Olfactory region, which is why loss of smell is one of the first symptoms. When the cerebral cortex is affected (at later stages of the disease), is when dementia is present (about 30% of patients)
I hope this helps the discussion.

there is so much evidence pointing to the fact that vaccines damage a lot of people….autism..my friend died an untimely death believing what the doctors told her …”your son has autism because u drank a beer..not because we poisoned your child & we dont want to take responsibilty…ive never had a vaccine nor has my kids …the fda is being allowed to kill us all in the name of the almighty dollar..go to a great website..”the axis of greed” and u will learn the truth..if u dont..u dont wanna know..

there is so much evidence pointing to the fact that vaccines damage a lot of people….autism..my friend died an untimely death believing what the doctors told her …”your son has autism because u drank a beer..not because we poisoned your child & we dont want to take responsibilty…ive never had a vaccine nor has my kids …the fda is being allowed to kill us all in the name of the almighty dollar..go to a great website..”the axis of greed” and u will learn the truth..if u dont..u dont wanna know..

Desiree was told by her doctors at Inova Fairfax and Johns Hopkins hospitals (medical records were exposed on internet) that it was likely the adverse reaction to the flu shot that caused her condition!!!. So You will have to put down these hospitals and their physicians the same way you do for GR and the others!!! after all the others just cling in the diagnosed given by the REGULAR MEDICAL ESTABLISHMENTS!!! are they the quacks then?

esiree was told by her doctors at Inova Fairfax and Johns Hopkins hospitals (medical records were exposed on internet)

Link please? Otherwise you have nothing. We’ve have asked for actual evidence that these doctors said this, or that they even existed, and there has been nothing. Until you provide proof, you are just telling stories. Stories we will ignore until you provide the evidence.